Sunday, November 20, 2011


I cannot wake up. I never sleep this much and no matter what I do I'm so sleepy. I wake up from 10hrs of sleep and all I want to do after I eat my breakfast is go back to sleep. So, I finally give in and sleep for 3 more hours. Then wait for myself to get sleepy again. I am on prednisone right now so it seems wierd that I'm SO sleepy! It's frustrating and not the relaxing sleep that people might think. I'm just really frustrated today and want to cry, honestly. At this point, I don't even remember what it is like to be normal. Kind of like when someone has a loved one to die and after a period of time it's hard to see that person's face in their mind. .  That's how I feel. I don't remember what good feels or looks like. I just put on a front to people lately. I don't want to explain it or anything. That's fine by me. I don't have the energy to explain it or look at the puzzled face people make when I do explain it. I just feel like I'm getting sicker every day and there's nothing that I can do about it.

Thursday, November 10, 2011

My Flare Lady

If there is one thing I cannot stand about this disease, it's the unpredictability.  Two weeks ago I felt pretty darn good, but now I'm fighting a flare. Now that I've had a name for my group of symptoms for a little over a year, I have started to know how to spot a flare.
  • increased, almost exaggerated fatigue - not limited to sleepiness
 It's comparable to when you've had a bad cold/sinus infection.  Even the couch isn't comfortable enough for me when I feel this type of fatigue. I have to have my bed and my favorite blanket.  "Sicky Blanket", as Zach and I have named it, is a cloud from heaven that I sleep with every night now. It's actually the lightest weight option of down comforters that Macy's sells. So while it provides decent warmth, it's not stuffy. My Lupies should all have one. 
  • burning in muscles
  • body aches (comparable to the flu or a bad cold)
  • stiff painful joints
  • more recognizable butterfly rash on my face
     The rash actually comes and goes. I always have a hint of it, even with makeup, but when I really feel awful it's easier to see.

So when I see this all start to mission is clear & I know what has to be done!  This is just what gets me through it, and I'm sure it's different with everyone. 
  • Prednisone - I hate it, but it helps with the burning muscles and sloooowwwly gives me energy after taking it for about a week or so.
  • A full stock of all my medicines and vitamins -- nothing is worse than having to call my doctor, wait on the medicine to get called in (or have to go to the doctor), and go pick it up when I feel this sick. 
  • Warm baths!! Honestly, it's hard to even muster enough energy to bathe myself during a flare, but if I can scrape myself off of the couch and just sit in the tub, it helps me big time. This isn't clinical by any means, but I feels like it warms my joints.  It definitely eases my muscles, and it feels good to wash the "icky" feeling of being sick off of me.
  • Sleep, sleep, sleep
  • Movies -- they are a great escape! Or even a show that you haven't ever watched, or could watch the seasons of.  We have Netflix and I will just log in and watch episodes of Frasier or I pick movies to watch instantly on my computer in bed.
  • Indulgence. My indulgence of choice? ...candy. Come on, sugar is a treat.. and if you're feeling like crud, you deserve it. I wouldn't recommend going overboard though! Most Lupies are on Prednisone, it is a steroid, so it already makes you gain weight -- don't encourage it!
  • Get over it. I'm trying hard not to get mad at myself for not feeling good. I just have to get over it. I used to feel guilty if I had to say no to someone or something.  I love my family and friends and want to make it to everything and spend time with everyone, but when I'm in a flare I will not be able to.  Feeling sick is bad enough without feeling guilty or placing blame on myself for a disease I cannot control. If someone loves me, they will understand and not take it personally. It helps weed out the good friends from the ones that can kiss my butt. I know it sounds silly, but this step is the hardest for me.
There are so many more "tips and tricks", but I think these things are the top of my list.  I'm going to do another post in the next few days! LuLu Beauty: Tips & Tricks... watch for it! You don't even have to have Lupus to appreciate some of these time and energy savers!